User Reviews for Xyrem

The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.

Reviews for Xyrem

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For Narcolepsy"I have mixed feelings about this medication. When you put aside all the side effects, it's great. It's doesn't quite put me to sleep as quickly as they say, but when I am asleep it is the best sleep I've had in a VERY long time! But sometimes I feel the side effects out way the sleep. If you have any kind of depression.. I would be very careful. The nausea can be very bad, my legs turn into jello, I can get very irritable, I don't have much of an appetite, and I have to take a stimulant in the morning for the grogginess. But even with all of that, I would still recommend this medication because it works. It definitely helps with narcolepsy and my cataplexy. I was very nervous about trying it, but I love my doctor for pushing me to try it!"

For Narcolepsy"My experience about xyrem is phenomenal. Going back, I can't imagine myself how I survived before this medication, comparing how I used to feel before taking the medication. I'm at least 70 percent feeling better. I read a couple suggestions on this website as far as not eating 2 to 3 hours before and not drink much water 5 hrs before, I will try them to see if I can get any improvement. So far my only issue is on the second dose, it wears off quick, it feels like I passed out for a couple hours and wake up to pee and that will be it but still can feel that heavy eyes just won't be able to fall asleep again."

For Cataplexy"I am 57 years old and have had some version of narcolepsy since age 30 or 35. I tried Nuvigil and then added Adderal but still had breakthrough narcolepsy and cataplexy. The cataplexy broke my foot a year ago and my wrist six months ago. This is the most amazing medication! I would go to bed at midnight and awaken at 10 or 11 in the morning. I would fall asleep for a cumulative 2 to 3 more hours during the day. I awaken between seven and 8 o'clock bright eyed and bushy tail to use my parents phrase. I am fully alert and have no further problems with sleepiness throughout the day. I am still experiencing occasional morning nausea and inappropriate diaphoresis or sweating for no reason. An ice pack at the back of my neck will break it."

For Narcolepsy"Xyrem does help me get rested enough so my daytime sleepiness is less.. And definitely helps with cataplexy. However, I just restarted it 5 days ago and I have experienced nausea, headache, sweating.. I really hope it subsides the longer I'm taking it."

For Narcolepsy"For the last month I have been sick, very restless sleep, muscle spasm, vomiting for several hours with movement after meds have worn off. I had to stop using Xyrem this month because the same faulty batch I got in January, they shipped me again this month... I tried to call and complain about the side effects. Unfortunately the SDS Pharmacy isn't offering any solutions to fix or solve the issue that a lot more people are dealing with.... So disgusted with this company"

For Narcolepsy"I have had narcolepsy ever since I can remember. Insead of hanging out after school I would come home and go to sleep for the night. If I can sleep I do even if I only have 10 mins I well fall asleep. I can't drive more then 10 mins even if i manage to keep my eyes open I start seeing double. Its been a huge struggle that most people don't understand or write off as lazyness or being to busy. I have so many crazy stories of things I have fell asleep doing or things my children have done while I unintentionally feel asleep. Stimulants would help the first couple days. Day 4 I make as well not even take 1 or 2 or 3 or 4 because I would still fall asleep. Xyrem has help but still fall asleep all day. Currently been taking for 1 year thinking of increasing"

For Narcolepsy"After a few years of being diagnosed with narcolepsy and excessive daytime sleepiness, someone I knew who had narcolepsy as well recommended I ask my doctor about Xyrem. I am glad I did because about a week after taking it I started feeling normal again.
I still have some "bad" days, but they are better than my best days prior to taking Xyrem.
The only thing I don't like is their list of side effects being unclear. I have had stomach issues, loss of appetite, and significant weight loss. I was beginning to think something was wrong with me because these are not side effects listed on their website. It wasn't until I stated searching other forums that I am finding others having these same types of symptoms."

For Narcolepsy"I have been on this medication for narcolepsy with cataplexy since 2013. It's the only drug to have helped me be able to keep driving, and be awake during the day when I'm supposed to and sleep so good at night. It's truly a blessing!!! The side effects are nonexistent for the most part.
I highly recommend it!!!"

For Narcolepsy"I had been terrified to try this medicine because of the warnings. I was diagnosed with Narcolepsy w/ catalepsy 4 years ago Started Xyrem last year. Amazing. I take the full dose twice a night.I don't have to struggle to make myself get out of bed in am.Don't have have other symptoms I had before. take my daytime medicine,but don't need as much and I fall asleep (unintentionally) less frequently during the day. I usually take only one nap during the day. And I don't get sleepy driving like I used to. I take it right as I get into bed. I still can be awoken by loud sounds or my dog, which is good because I feared that I would not wake when needed. I had no side effects-they are over-blown. In the past, this was sold over the counter!!"

For Narcolepsy"I am 20, 21 in a few months, I am 150lbs and 5'6" and I am on 2.5g 2x per night with 3 hours between the two doses. I am on night #8 and I wanted to share my current experience for newly prescribed patients. I am very happy with this treatment! My quality of life has improved around 80% and I realize I still have a while to go before my body is completely adjusted to this new chemical. I do not take any ANY other medications, and I only eat fresh foods, no fast foods for years, and I have cut my sodium intake due to the high levels of sodium in xyrem. I have only had one B12 energy shot since my first day on xyrem. I have very vivid dreams (that feel like) all night. I sleep very solid and deep, and when its time for dose #2 my body knows."

For Narcolepsy"I'm still in the early stages of taking XYREM (week 6), but it has changed my life. I almost never take naps, and have had my narcoleptic episodes significantly reduced. I get around 8 hours of sleep every night, and can stay awake with no issues all day. Sometimes in the morning I feel a little groggy, but can't get back to sleep which i'm sure is just the medicine wearing off as it goes away shortly after I get up and about."

For Narcolepsy"I was diagnosed with Narcolepsy in the beginning of 2014 at the age of 42. Despite a clear diagnoses and despite struggling with this disorder for close to 37 years (first symptoms appeared when I was 5 years old in form of hypnagogic hallucinations and cataplexy) I was resisting my doctors recommend course of action which included first and foremost the use of Xyrem. I had like everyone else visited forums and was very concerned about the lack of success stories and of course the possible side effects.
By the beginning of 2015 I came to the realization that I had not only completely exhausted myself but also all alternative routes of fighting my narcolepsy and therefore decided to try Xyrem.
I was very nervous and the first few nights and days were difficult and fairly unpleasant as my body didn't appreciate the sodium oxybate. Both my doctor and the central pharmacy were very helpfully, but in the end it is oneself who has to get through it.
After 5 days I started to experience what I most of the world would call proper sleep.
I go to bed and take me dose and after 15 minutes fall asleep. 2-3 hours later I wake up by myself and take the second dose. Normally I wake a few minutes before the alarm goes off and I manage to get through the day without coffee (impossible a few month ago) and only 200mg of Modafinil. The night is no longer a continues row of dreams, but passes in the blink of an eye.
There are a few rules that I feel are key to success.
Don't eat 3 hours before going to bed.
Don't drink anything put small amounts of water.
Stay away from coffee after lunch.
Stay away from chocolate and sweets after 5pm.
Keep a diary of your progress or get yourself a Jawbone, Fitbit or some other tracking devise.
And finally, go out and tell people of your success and visit a forum and leave feedback even when you don't have the time, because other people need to know that there are success stories."

For Narcolepsy"I have been taking Xyrem for 8 years now, and only wish I had started sooner. The first 32 years of my life were spent suffering from undiagnosed narcolepsy and constantly being exhausted during the day. After finally taking myself to a sleep specialist I discovered that, even though I would sleep at night, I was never getting any recooperative sleep. They started me on Xyrem (and methylphenidate er during the day) and I feel so much better now. The cataplexy and sleep paralysis are gone! I sometimes wonder if I am building up a tolerance to it because it may take me an hour to fall asleep, but I love this stuff! I haven't had many side effects, except if I'm still awake after an hour and a half - then it's pretty miserable and nauseous."

For Narcolepsy"This medication has changed my life. I have never had a problem falling asleep. But I wasn't experiencing restorative sleep. I have been chronically fatigued my entire life. This medicine has almost completely resolved my cataplexy. I still have an occasional episode. No stimulants ever helped. I could take Ritalin, dexedrine and go right back to sleep. I've never known what it felt like to get stage 4 restorative sleep. It has helped my mood disorder and chronic pain as well. Never underestimate the value of a good nights sleep. This stuff has worked magic. I don't know what will happen when the coupon expires as my insurance company has balked at paying the high price for this."

For Narcolepsy"I have been diagnosed with narcolepsy, cataplexy, and fibromyalgia. I was on Provigil and Adderall, and still falling asleep. Doc started me on 2.5 mg twice a night. I was sleeping. At night only! I am on 3.0 mg now, and still taking the Adderall during the day. I am not falling asleep at work, and my cataplexy and hallucinations are almost nonexistent! I still get tired pretty early on in the evening, but I was starting to worry about my ability to continue working. It also seems to be helping with the pain. I get nauseous sometimes during the day, but have found that it's because I need to drink some water or eat something. I feel like the old me again. I just hope the insurance doesn't decide not to cover it."

For Fibromyalgia"Dramatically reduced pain, fatigue, daytime sleepiness, and fuzzy thinking. The last time I skipped taking Xyrem, I was unable to go to sleep all night. I am concerned about this should I need to quit taking it."

For Narcolepsy"I'm on 2.5mg twice a night. It puts me to sleep for two hours but it's the best two hours of sleep I get. Unfortunately, I don't sleep long while on it and I am wide awake after four hour for about two hours in the morning."